Hi MM--
At this point I like the left field! I've been on the right field of medicine forever and I haven't had much success. I will definitely spend some time tomorrow reading up on hepC. I know that there is something missing in the diagnosis. Thank you so much for the post!
Hello! Okay, I know this is coming from left field but, have you been tested for hepatitis C or another virus that causes a cascade of autoimmune and hormonal issues? I only ask, because I have first-hand knowledge that chronic hepC can cause thyroid dysfunction, low levels of hormones, fatigue, low white cell count, anemia, and a cascade of other things...Most people who get diagnosed didn't even know they have it! It is only blood-borne, but you don't have to be an IV drug user, get a tattoo or a blood transfusion to have an exposure to it...If you haven't been, get this checked out...You just never know... ~MM
My husband saw a neurolgist for regarding a potential seizure disorder while having other neurological symptoms, and he told us he only dealt with seizures. I can see why you would be frustrated. My husband has had one of his parathyroid glands removed in 2005 and one lobe of his thyroid removed in the 90's as well. He has not been well all year.
Yup, that was it. I was very calm during the appointment because the last time I tried to work with the doctor (at least this is what I thought I was doing), they got annoyed and became defensive for the remainder of the appointment. I don't know...I just feel like they miss a lot of things and unless I point them out, the whole appointment will be useless. But if I try to point some things out, they get annoyed that I express any knowledge of medicine, whatsoever! So, as of late, I've tried to remain tame. O:-)
Innovation is what is needed, you hit the nail on the head. My college had an accelerated-med program (3 years at the undergraduate level, then the students went right to med school for four years--so 7 years of schooling instead of 8 years) and I hate to say it, but the students in that program were not dynamic thinkers, in general. I was in many classes with them, and they were very focused on grades--that was it. I was actually really worried to think that they were going to be my doctors one day.....
Hey Jules, So that was the result of your appointment today?! That kind of thing makes me crazy: here you are, a patient clearly in need of some thoughtful response (and some TLC!), and all the doc can do is comment on the *one symptom,* among many, that was in his specialty? And couldn't he even try to pretend to have some level of interest in the underlying cause of at least that one symptom? Jules, keep trudging ahead--wear them down and eventually you'll get to the bottom of it, or *more likely* figure it our yourself from the tests they order but inadequately interpret.
Obviously I agree with your post about docs needing to "go out on a limb." Maybe another way of looking at this is that without taking creative, disciplined diagnostic "risks"--reaching a little when the protocols and textbooks fail--there can't be true innovation on the patient/doctor level. Innovation just can't happen without being driven by curiosity, engagement, a little passion, and in the case of doctors some level of deep empathy, compassion, and deep respect for the ups and downs that define the human condition. And evidence for lack of innovation and its underlying creative drivers is everywhere (well, maybe not everywhere, but most places) I look in the medical landscape. Okay, I'll shut up now. ;)
Summary: sorry it didn't go better today, and wasn't more satisfying, but hang in there!!
Oh, thank you, again, for the compliment! I completely missed your last post directed to me, yet I just read your note--to which I will respond, soon.
While we can't be sure it isn't your thyroid shutting down just yet (the ultrasound will help out with that one), the adrenal issues make it much more likely that it's not the thyroid starting the fire, but something else that's bothering both your thyroid and adrenals. Makes both lateral and systemic sense to me! :o)
Nothing good, that's for sure.....
The best he could come up with was that I'm suffering from "migraines" (without even looking at my pineal cyst). Then he pulled the same trick the other specialists have been pulling: "I can't comment on your other symptoms, since my specialty is neurology." He basically honed in on the fact that I get headaches, many of which have recently become excruciating, and wouldn't let go of this for the rest of the visit. I'm supposed to try taking Topomax to see if this will help get rid of my headaches...but why do I feel like he's putting a band-aid on a bullet wound?
He managed to billed me for a "consultation" that was of "moderate complexity", rather than as a "new patient" without a complex case. Maybe he came in early especially to see me today, or something? Good thing I have great insurance...until September 30th.
What happened with the neuro Julia??
Many doctors seem to be scared to treat things they don't entirely understand, or for which there are no "facts" by which to base their diagnosis and use to monitor treatment (although adrenal fatigue has some measurable values, I think.
Malpractice insurance or not, I think doctors should go out on a limb more, especially with patients chronically suffering from SOMETHING. Going out on a limb could be something as simple as ordering more bloodwork/tests, speaking to specialists about a patient's case personally (instead of just sending them to a specialist without so much as a report about the patient's condition from their perspective), or trying out treatments, with the appropriate level of caution. Maybe this would make patients (or their families) less likely to immediately think of suing if something goes wrong--because they knew the doctor was on their side, and was doing his/her best to treat the patient so they could feel better. It's interesting to me that there's no "malpractice insurance" for a patient who ends up withstanding permanent damage (including death) because a doctor was too busy watching his/her back and avoided aggressively treating a patient because they feared the repercussions of malpractice.
That's just my two cents, so I welcome any thoughts, even if they're opposing viewpoints. My above commentary may or may not have been influenced by an appointment with a neurologist, turned sour...........
WELCOME TO THE COMMUNITY!
Cheryl
Thanks for the post. I also do not understand why conventional doctors don't recognize adrenal fatigue. Even during the few days I've been reading about the condition the evidence seems overwhelming. And most importantly, it just makes logical sense! My new doc. does recognize it, but given what you said I wish he had treated it first rather than starting me on Armour. I'm seeing him on Wednesday about this. I am going to ask about the wbc issue you mention too (my Co2 is okay). I'm off to bed, so take care and thanks again!
Hi AR-10, I'm learning a lot from you (and Peggy) about adrenals. I just had no idea that the adrenals and TSH were connected like that. It's logical, though, that the adrenals would try to reduce local stress levels by signaling the pituitary. I've got some research to do! Any materials or web resources you could recommend? Thanks so much for the input; I really appreciate it.
Hey Jules, Just left you a note regarding your question. Girl, you're good! No one (amazingl) has suggested checking my Corticotropin-releasing hormone. I have wondered about hypothalamus issues since the early days of this mess, but the docs really didn't seem interested, focusing instead on the pituitary and thyroid alone. I didn't even know about CRH so I'll discuss with my doctor. In the meantime I'll keep an eye on how you're doing with the docs, etc. Hang in there and keep us posted!
This sounds like a classical case of "what came first: the chicken or the egg?" Except chicken = adrenal insufficiency and egg = thyroid troubles.
An ultrasound would be a good idea. I think another RAIU at this time would be a waste.
There is another possibility I thought of, and Peggy touched on.
If your adrenal glands are under enough stress, they will slow the thyroid down by influencing the TSH output of the pituitary gland. The adrenal glands are capable of suppressing your TSH in an effort to slow thyroid function. Doing this puts less stress on the adrenal glands. It is a defensive measure the adrenals take.
As Peggy said, if your adrenals are fatigued or overworked, treating the thyroid first can have a bad outcome. You either need to treat the adrenal issue first, or treat both problems at once, with emphasis on the adrenals and minimal support for the thyroid.
Thanks for your response, I really enjoyed reading it! Grad school won't be in medicine--at least not yet. I've always been drawn to the idea of becoming a doctor (specialist--like neurologist, surgeon, or a medical researcher), but I opted not to take the MCATs this past year since I was extreeeeeeeeemely busy with my final year of college (I don't like to recall how bad it was, but I was President of a fairly large student body, and I was finishing up two separate degrees--Chemistry and Biomedical Engineering--which is where I get some of my medical knowledge from, I suppose). I'll be heading to grad school to pursue a PhD in Biomedical Engineering for the time being, but I may leave with a Masters and head to med school. I'm pretty sick, unfortunately, but I'm hoping this doesn't significantly impact my life plans. Thank you for the compliment, though! I may go into medicine eventually.....
I was wondering what your CO2, sodium, and potassium levels were, if these were measured? Also, did you have pituitary hormone levels measured? This would include TSH (we know you had this one done), ACTH, growth hormone, prolactin, etc. You should have these looked at. If your pituitary is small, it may not be putting out enough ACTH, resulting in the adrenal insuffciency you're seeing with your cortisol test. This would also account for the wacky thyroid values. It would actually be "secondary adrenal insufficiency". Did the radiologist note any abnormalities with your hypothalamus? You might want to get your levels for Corticotropin-releasing hormone (CRH) evaluated, as the problem could be in the hypothalamus, which actually helps control the pituitary. If there are problems with CRH levels, your pituitary could look fine upon imaging, but it's getting bad signals which then results in bad signals sent to the thyroid...and, well...your thyroid might think it doesn't need to take up iodine or produce more hormones when it actually should be.
You could have RAIU done again, but what I was suggesting was to have an ultrasound of your thyroid done. This way, you'll find out if your thyroid is normal-sized, normal in texture, and nodule-less. If there is something abnormal that shows up in the ultrasound images, however, this would be a big clue to figure out what's really going on. I really do think it's systemic and that the thyroid is just one of the things being affected along the way. I could be wrong, and I'm definitely no doctor, but your symptoms and test results don't scream "thyroid disease" to me; at least not a classic case.
Haha I hope that all made sense! Do you mind if I ask what your profession in (you can PM me if you'd prefer not to post it here)? You seem pretty good at picking up on all of this, I'm definitely impressed!
Henry,
(If you will allow me, I tend to describe things in everyday mans language. I could get technical, but that is not my style. I will leave that up to the Phds' and the MD's ha ha)
Most allopathic drs do not recognize adrenal fatigue. I do not understand that, because there is a lab test to prove it and drugs to treat it.
Everything that I have read has led me to believe that when the thyroid is not responding to tx it is because the receptors are blocked and the TSH can not get in.
This also affects the WBC, the Co2, and many other components of our blood.
Usually people "crash" as you said when they treat the thyroid and not the adrenals if it is adrenal fatigue. The body can not tolerate the T3 at this point. That is why I thought that about your case.
I am not going to say that this is true for everyone because there are pituatary and hypothalmus issues just as AR posted. And also many other problems such as tumors and many other factors to think about.
Hey Peggy, Makes sense since everything else about me is exhausted too! Do you think that adrenal fatigue could cause all of the other symptoms? My new doctor is seeing me tomorrow about the adrenal fatigue issue, which should be interesting. I'll pass on any new information that might be helpful to others out there.
And then again, your adrenals could be exhausted.
Greetings AR-10 and thanks for the reply. Man, your case sounds difficult to endure--although it appears you are beginning to level out in contrast to the hypo- hyper-extremes. Just be relentless about finding a good doctor. After 18 months of bad doctors I finally found an "integrated medicine" MD who immediately recognized initial steps that should have been taken much earlier. He's very creative and thoughtful. If you could find someone like this to guide you with meds., to specialists, etc., I bet your situation would improve. Best of luck and I'll keep reading your posts.
I am going to talk to my doctor about more TSH related tests and thanks for the nudge. The pituitary-hypothalamus pathway needs more attention.
Thanks!
Hi Jules--Thanks so much for the reply, which was very helpful. I hope the graduate school you are heading off to is in medicine! I just read your journal entry about the visit to the doctor. It is appalling how dismissive and UNCREATIVE the doctor is. I've decided that many doctors (most of my earlier one) are trained to have the cognitive habit of thinking in linear terms of protocols, etc., rather than in lateral, systemic terms. Thanks goodness for your health (and general path in life) that you seem to be able to balance both ways of reasoning. Hope you feel better soon.
Your thought about the connection between the WBC level reflecting a systemic problem that yields symptoms like thyroid dysfunction is really interesting. Intuitively it makes sense. My new integrated medicine doctor did do an adrenal panel (saliva, 24 hr) and found low cortisol in the morning (8am and noon) that spiked to being too high out of range) in the late afternoon and even higher in the early morning. My DHEA levels were all very low in the normal range; the person interpreting the panel wrote "adrenal stress". Low testosterone, at the very bottom of the normal range (weird because I had just been injected with T under my old doc. three days earlier). Finally, I had high estradiol for a male--at the very top end of the normal range.
I also agree that another RAIU of the thyroid would be very helpful, since it was impossible to read well last time. (By the way the uptake was 2% at 4 hours and 3% at 24 hours). The pituitary was normal other than being small.
When I was in NYC I ran a large cultural organization, and was not exposed to chemicals.
Thanks again!
Or when your bloodwork was taken, one value hadn't had time to catch up to the other one. When were your initial levels measured (when fT4 and TSH were both low), and do you recall how low they were (i.e. the actual numbers)?
The low white blood cell count strongly indicates a viral infection, which means there may be something else going on and your thyroid is just the latest casualty, or is being set off-kilter due to something cropping up--but you would likely have a fever, experience chills, diarrhea, and nasal congestion.. Lupus immediately jumps out as a possibility, though I'd have to hear more about your symptoms to be sold on this one. Did you have your adrenal function tested? This might be worth looking into. The internist might've told you to ignore the WBC count because your level is not alarming--yet. It's close, though. Typically, a WBC count less than 2,500 cells/uL is very worrisome, because it greatly increases the risk of infection.
I'd recommend having an ultrasound of your thyroid done if you haven't already. Since the RAIU wasn't showing any uptake, you might want to take a look at your thyroid more closely to determine if there is anything abnormal visible in the images taken, like nodules or a heterogenous echotexture.
What was the job that you left, if you don't mind me asking? Did it involve radiation or chemicals of any sort? Were you on any medications when your bloodwork was done? I'm assuming the MRI of your pituitary gland didn't turn up anything else abnormal, right?
When your Free T4 was low, your TSH should have been high.
There is a problem there that is being missed. Either pituitary or hypothalimus.
Your Free T4 will support a normal Free T3 even when it gets low. When it gets to the bottom of the normal range, though, it can no longer support the demand for Free T3 and your Free T3 dives.
I have no idea what the low white blood cell count means. Maybe your immune system is weak? Got no idea.
Your TSH being low normal is good. Your Free T4 being low normal is bad. Your doctor should be treating by your Free T4 AND your Free T3, not your TSH. It sounds like he is.
He/she should also be running a few more tests to see why your TSH was (is?) acting odd.